Sharing the lessons along the way…

Posts tagged ‘living with chronic illness’

Unlikely Gratitude

I have a neighbor who has a little Chihuahua dog and he never kept him on a leash when they were in their front yard.  My boys and I struggled going past the house on our because my boy Amore’ often would get aggressive with other dogs.  When Amore died, Duke met the dog and the dog would often come to the other side of the street to see us on our walks.  Ruby met him too.  The guy seemed like a nice enough guy despite the one negative experience I had.

When I was using the walker and the motorized wheelchair, we didn’t have a choice but to go by his house because the sidewalks on the other street were better and I was less likely to fall.  But we always had to take that chance of the little dog coming and my dog or dogs pulling me off balance.  Once the neighbor yelled at me because I wouldn’t just go on down the same street instead of passing his street.  I yelled back that the sidewalks sucked and that the walker didn’t work well and to please get his dog.

We still exchanged pleasantries after that incident and I had no hard feelings because he couldn’t understand why sidewalks would be a problem or that Amore was often unpredictable—who could who hadn’t had to try using a walker or had a problem dog.

Fast forward from that moment three or four years ago to July 2017.

Hope Fiona and I were walking on a Friday evening past his house, which is our normal route.  I had noticed I hadn’t seen much of him this year and that he appeared to be frail and wasn’t walking that well in the past month I had seen him.  He stops me to tell me he was in a bad car accident in January and when he was having to learn to walk again, his first thought was of me.

He said he remembered me always continuing to walk my dogs whether it was with a wheelchair, a walker or a cane and that he hoped he had the same strength as he was struggling through his recovery.

He shared his journey from wheelchair to walker to cane and was proud to say he was getting around pretty well without the cane now and could walk around the block.  He asked me how I found the strength to do it and continued to say how much he thought of me during and still because he had a tremendous head injury that has to continue to heal.

We talked about muscle memory and physical therapy and water therapy, and even though it was starting to rain and Hope really wanted to walk, we talked about the importance of continuing to move forward no matter what.

He asked me my name because in the 12 years I have passed his house and talked with him, we had never exchanged names.  He thanked me for something I had no idea even happened.

This experience reminded me that I was doing something right in this life, but also reminded me about how someone is always watching you and that making an impact on others’ lives is far bigger than what you deliberately do for someone else.  It is more about who you are and how you are while you are doing the simple, routine things in this life that has just as much of an impact.

 

 

Keepin’ it Real!

On my bathroom mirror, I have written:

Stay Focused.

Stay Authentic.

Remember the mission.

I think I wrote it a few weeks ago and I cannot even remember why I felt compelled to change the previous message.  What I do know for sure is that I see it far more than I have seen many of my previous bathroom mirror messages, and it makes me think every time I do.

Am I getting distracted?  Am I being authentic?  Do I remember what I intended to be doing?  I tend to be more easily distracted in real life, so I am reminding myself to stay focused on my intentions for this year.  Authenticity is synonymous with being genuine, but I like the work authentic better.  Am I keeping it real?

A few weeks ago, I was frustrated that I wasn’t able to do more.  I was ready to do more once Duke’s work here was done, so I was ready and felt like I couldn’t.  I felt like I couldn’t have the reach I believed I needed to help people help themselves—to help even more people to help themselves.  It was authentic, and it was not self-serving in the least.  Quite the opposite really.

Bam, Pow, Shazaam…

Three weeks later, I am in a position to expand the reach to more people.  In a whirlwind of interestingly timed events and genuine speaking out for the mission of a broader reach, it happened.  It all seemed synchronistic and very fast for me.  I am fairly certain that I played only a very small role in all of it, except for authentically expressing myself at the opportune times.

My poor brain was reeling after so much positive happening, one thing after the next, and I was looking forward to a much-needed break from it to assimilate and process all of it over a three-day weekend.

I started thinking about authenticity most of all.  I value this very much both personally and professionally.  I know if someone is being real or genuine quickly in an interaction.  I want to make sure that I am being real and genuine too.  I am not sure I have ever been more authentic in my life as an adult, and I am proud of that.

What I have learned is that being authentic gets you farther, and further serves you than trying to be someone or something you aren’t.  I learned that long ago, and now I learn it again, but on a different level.  I am starting to really enjoy just being me.  I love having no hidden agenda.  Whatever is, well, it is.  If I want to make it better, then I just say so because there is nothing to lose by doing so.

So, I am keeping that message up on my mirror for a bit longer.  There is a lot of work ahead.

WOW–September!

September arrived so quickly this year.  Perhaps I say that every year?

The Tawny Girdle

I was looking through pictures on my phone and realized that it was two years ago this month that my bad intrathecal baclofen pump was finally removed.  Since then, I have gone from wheelchair to cane, wheelchair to walker, fallen a few times, and now get around mostly without any assistive equipment.

Pools, bikes, practicing walking normal, stretching and a variety of other physical therapy things have helped me tremendously.  What I think has helped as much as those things is that I finally feel confident–that no matter what level of mobility and no matter what level of symptom interference–I can manage this illness enough to keep moving forward.

I have never been high on any self-confidence scale—likely right out of the womb it began—so to feel some confidence about managing something that ripped my world apart years ago feels pretty huge to me.

It took quite a while to convince me.  Probably longer than it needed to take, quite honestly.  And, it all came together with the Cali Magic of December, which has yet to lose its momentum in my life.  The Cali program serves to help me continue to trust that feeling of confidence, as it has become a part of what I am sharing with both the residents and my coworkers on a regular basis.

Even with the loss of Duke thwarting me, I still feel the momentum and see the momentum manifesting everyday—whether I am into it doing so or not.  Some days, the momentum scares me a little and sometimes I just need to be grieving Tawny.

I like to think Duke is behind me pushing me forward into those very things he pulled me back into years ago.  He is why I went back to the Homeless Empowerment Program (HEP)—I did it for him so that he could have a job since my improved mobility with the first pump put him out of work.  I did it for the folks at HEP because I remember how much it helped me to have a critter who only loved show up now and again.

Little did I know what would be in store for me next there.  Little did I know just what I could really bring to the table to help—even without my partner in crime.  I wasn’t sure how much I had to offer after the trauma of homelessness, the gap in true full time employment, the years of so much medication that my brain was a constant fog.  The little doubting Tawny in my head kept saying, “yes, but…” and “but, what if…”

Eleven years after staying at HEP as a homeless resident without my Duke and Amore, only two years after choosing to remove my pump, I am thriving as a full time employee nearly 9 months into it.  The end of an era has opened up an entirely new era.  It all seems to be happening so much faster than my little doubting and slightly reserved Tawny had it planned.

Just the same, it is September and WOW, 2015 has been quite full of achievements, sadness, newness, change, and happy surprises all around!

Life is Twisty-Turny

twistyturny

I find day-to-day life rather entertaining.  It is very twisty-turny in the way that one situation leads into another.  It is twisty-turny in how interactions with one person influence interactions with the next, and it certainly doesn’t stop its twisty-turny nature there.

Living with a chronic condition is equally twisty-turny.  One relatively “normal” bodily shift can twisty-turn all other already compromised functions.  One medication shift, one night of poor sleep, one infection, one more physical therapy exercise…makes everything all twisty-turny.

I have probably taken some combination of my dogs on walks a hundred times passing these twisty-turny trees over the last ten years of living in this neighborhood.  I was having a particularly twisty-turny week last week when they caught my eye and made me smile.

Life is twisty-turny.  Even in nature, we see these twists and turns.  It is part of the joy of growing through life.  Moving through the twists and turns to see the new twists and turns is part of the fun of it.

I think we have this idea that there aren’t supposed to be twists and turns in our lives and that we are doing something wrong if we have them, so we tend to resist them.  I know I spent nearly 30 years resisting them because I really thought that was what a person was supposed to do.

It has taken a while for me to truly “get” that these twists and turns make for one amazing ride through this life.  In my particularly twisty-turny week last week, I did my best to go with it and to keep moving forward through all of it.  I even made up comedy shticks for some of the less pleasant of the twists and turns.  I know that once I get past the twists or turns, there is another side, so it is just a matter of moving through.

The twists and turns were simply twists and turns.  I didn’t allow myself to put more meaning or more energy into any of them.  Instead, I remained focused on what I needed to accomplish each day and figured out ways to amuse myself along the way.

It’s ok that life is twisty-turny as long as living life, as fully as possible, doesn’t stop at the first twist or the first turn.

…wait for it…

wait for it1

Sometimes I feel like a contractor building a demolished house from scratch.  Engineers and architects are being consulted, land surveys are being completed, plans are being designed and redesigned, and permits being applied for—all long before the first footer is ever poured.

By the time the foundation is laid, it seems that an inordinate amount of time has elapsed.  This house is taking forever to build!

Over the years with illness, I have grown more accustomed to being friendly with patience.  Nothing in the world of illness happens all that quickly.

I haven’t always been so patient with my planning and desire for immediate results.  In my 20’s, I would want the house built the day after the plans were approved.  I would have been ready to paint and lay the flooring day two and ready to move in before a week was out.  I spent much of my life getting way too far ahead of myself.

Now I don’t mind making sure the foundation is laid properly, so that the house will stand–long after I no longer live there.  The structure and grounding is more important to me than the décor, and the time it has taken to make that solid will be well worth it.

As long as there is forward progress in the construction of it all, I am satisfied with where things are.  For nearly seven years, the foundation has been in progress.  Now the process of truly rebuilding something  has begun.

The first part of the process—the minutia and the details—have been wonderful opportunities to develop a solid hold on what it is that is going to be built.  Even that can be amended by the architect throughout the process, but the commitment to build here, upon a more solid foundation, has been made.

While I have no idea anymore just how the end result will look, I know it can be legendary!

Symptom-land Remix

The sun

The whole gist of this blog is to share my journey with a chronic, progressive illness.  You will notice that I actually don’t spend a lot of time talking about the illness or my symptoms, however.

I have likened living with a chronic illness to be similar to having an infant that arrives and totally changes the way you have to do everything—only it isn’t a cute.  I do most things differently and have had to rearrange that as different symptoms become worse or better.

While I deal and manage my symptoms on a daily basis, I still don’t spend as much time talking about them as I do managing them.  For me, if I am able to see the lessons in my day-to-day life, and to show up for life with a genuine smile, then I am being successful in the management of my symptoms.

I can hardly see the lessons when I am frustrated or stuck focusing on my symptoms.  Actually, there are times when I can hardly think about much else when I am stuck there.  You have certainly shared many of those moments with me throughout the postings over the last several years.

Today, there was a lot of inquiry about symptoms.  I don’t mind sharing, but sometimes I am just as confused as you are about what I can and am unable to make my legs, feet and such do.

There doesn’t seem to be much of an understanding about why I seem to do well on flat land, but cannot go up an incline without assistance.  Or why propelling myself in a forward motion works well in some instances, but in others I need to push off of something, and why that seems to vary with no real rhyme or reason.

I have unanswered questions that will probably be left unanswered.  I am ok with that at this point because I really would rather spend my energy elsewhere.  It is funny what happens when there are a lot of questions, however.  (Not so much ha ha funny sometimes.)

It is probably one of the reasons I prefer to see doctors only when I really need to see them—I don’t like to focus on my symptoms.  I am more than happy to do whatever I have to do to manage them and figure my energy is better used toward that end.

For the latter part of the afternoon, however, I had a little detour into symptom land.  While I was still productive, I found myself actively having to shift my focus away from them and back to what I was doing.  It isn’t that I am not aware of the symptoms or that I am trying to pretend they aren’t there—I know it’s all there.  I am not trying to minimize it either.

It is what it is, I reckon, for me.  It doesn’t run my life like it did in the early years and most of that is because I stay out of symptom land and stay in symptom management land because it only serves to dampen my quality of life when I don’t.

If you don’t have an illness and think you can’t relate, then think about this example.  Let’s say you didn’t get enough sleep last night and all you can think about is how tired you are.  Are you going to feel any better doing that?  It really isn’t much different!

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